Research shows that, when given the opportunity, people with serious mental health conditions are quite capable of identifying non-traditional goods and services that support their well-being and independence.”

Does self-direction work?

Some policymakers, providers, and family members are skeptical that people with serious mental health conditions are capable of self-direction. These perceptions get in the way of not only the broader adoption of self-direction but also the rights of individuals to pursue meaningful, independent lives in the community. 

Below, we share findings from independent, nonpartisan evaluations of self-direction efforts—including our own evaluation, the Demonstration of Self-Direction in Behavioral Health—to help dispel these misconceptions.

 

Major Evaluations of Self-Direction

Evaluation of the Demonstration of Self-Direction in Behavioral Health

Funded by the Robert Wood Johnson Foundation and the New York State Health Foundation, with support from the Substance Abuse and Mental Health Services Administration, the Demonstration of Self-Direction in Behavioral Health project is exploring the impacts of mental health self-direction in the United States. HSRI is evaluating implementation activities and outcomes as demonstration projects roll out across six states: Florida, Michigan, New York, Pennsylvania, Texas, and Utah.

The project is ongoing, but early findings reveal that participants are quite capable of identifying non-traditional goods and services that support their well-being and independence. Our recent study of Florida Self-Directed Care showed that many self-direction participants used their monthly budgets to first meet their basic material needs, including dental and vision care and short-term housing assistance. With those basic needs taken care of, they were better positioned to focus on setting and achieving personal recovery goals. 

Evaluation of the Personal Health Budget Pilot Programme

In England’s self-direction pilots, evaluators found that people who had more choice and control over a personal budget also had better outcomes and lower inpatient and outpatient service costs. In particular, quality-of-life outcomes were better in program models that gave participants greater flexibility in what they could purchase and promoted their informed, active engagement.

Read the report

Evaluation of
Cash & Counseling

The Cash & Counseling national program introduced or expanded participant-directed personal assistance services for frail older adults with disabilities and other people with disabilities in the Medicaid programs of 15 states. The program was a joint venture between the Robert Wood Johnson Foundation and the Office of the Assistant Secretary for Planning and Evaluation in the U.S. Department of Health and Human Services.

Program participants managed a monthly budget based on what Medicaid would have paid a home care agency to assist them with personal assistance services, like bathing, dressing, and getting out of bed. The results of this large, controlled experiment were overwhelmingly positive. People who self-directed had fewer unmet needs, the same or better health outcomes, and higher satisfaction with their everyday lives than people who did not.

Read the report

 

Published Research on Self-Direction
(descending order by date)

Exploring Personal Medicine as Part of Self-Directed Care: Expanding Perspectives on Medical Necessity

By Gretchen Snethen, Andrea Bilger, Erme C. Maula, and Mark S. Salzer
Published in Psychiatric Services, April 2016

The authors examined the types of goods and services that individuals with serious mental illness request in a self-directed care intervention, analyzing the requests and purchases of 60 participants who had been randomly assigned to an intervention. They concluded that self-directed care may be a service delivery option that allows consumers to access their own personal medicine and better address their needs.

Participants' Assessment of the Impact of Behavioral Health Self-Direction on Recovery

By Bevin Croft, HSRI, and Susan Parish,  
Published in the Community Mental Health Journal, February 2016

The authors analyzed the content of 30 in-depth interviews with individuals from two self-direction programs, and found a positive relationship between self-direction and recovery. They found that self-directing participants first sought to meet basic needs for food, clothing, and shelter with their support funds - as the initial first step in their recovery. The authors also found that participants' gains in one area led to achievement in others, fostered by a growing sense of independence, self-esteem, and self-confidence. 

Self-Directed Care: Participants' Service Utilization and Outcomes

By Jennifer Spaulding-Givens and Jeffrey Lacasse
Published in Psychiatric Rehabilitation Journal, March 2015

The authors examined the demographic characteristics, service utilization patterns, and outcomes of individuals enrolled in the Florida Self-Directed Care (FloridaSDC) program. They concluded that participants’ service purchases were rational given the poverty in which they live, and that their outcomes did not suffer when they controlled decisions regarding their service needs. The findings highlight the utility and value of the personalized budgeting and individualized planning components of SDC. The findings also point to the need for practitioners to implement innovative strategies to enhance participants’ employment readiness and supported employment opportunities. 

The effectiveness of personal budgets for people with mental health problems: a systematic review

By Martin Webber, Samantha Treacy, Sarah Carr, Mike Clark, and Gillian Parker
Published in the Journal of Mental Health, May 2014

The authors reviewed 15 studies to examine the effectiveness of personal budgets for people with mental health problems. They found mostly positive outcomes in terms of choice and control, quality of life, service use and cost-effectiveness. However, they also point to methodological limitations that made their findings rather unreliable and insufficient, and they call for further studies to inform policy and practice for mental health service users.

Economic Grand Rounds: A Self-Directed Care Model for Mental Health Recovery

By Judith A. Cook, Carolyn Russell, Dennis D. Grey, Jessica A. Jonikas
Published in Psychiatric Services, June 2008

The authors examined data on 106 individuals in self-directed care programs and found that, compared to the year prior to their enrollment, participants spent significantly less time in psychiatric inpatient and criminal justice settings in the year after their enrollment, and showed considerably better functioning. They also found that of approximately $58,000 in participants' expenditures over 19 months, 47% was spent on traditional psychiatric services, 13% on service substitutions for traditional care, 29% on tangible goods, 8% on uncovered medical care, and 3% on transportation.

Does Mental Illness Affect Consumer Direction of Community-Based Care? Lessons From the Arkansas Cash and Counseling Program

By Ce Shen, Michael A. Smyer, Kevin J. Mahoney,  Dawn M. Loughlin, Lori Simon-Rusinowitz, and Ellen K. Mahoney
Published in The Gerontologist, February 2008

The authors compared and contrasted the experience of elderly participants in the Cash and Counseling program with and without mental health diagnoses. They found that, from the perspective of consumers, the program works well for participants with mental health diagnoses: showing positive outcomes with respect to satisfaction with care arrangements and the paid caregiver's reliability and schedule, unmet needs, and satisfaction with the relationship with paid caregivers.

Consumer-Directed Care for Beneficiaries With Mental Illness: Lessons From New Jersey's Cash and Counseling Program

By Ce Shen, Michael Smyer, Kevin J. Mahoney, Lori Simon-Rusinowit, Judith Shinogle, Julie Norstrand, Ellen Mahoney, Carole Schauer, and Paolo del Vecchio
Published in Psychiatric Services, November 2008

This study examined nonelderly Medicaid beneficiaries with a diagnosis of mental illness, comparing and contrasting the experiences of those in New Jersey's Cash and Counseling program with those receiving services provided by an agency. Based on an examination of outcome measures, the authors found that, from the perspective of consumers, self-direction is appropriate for participants with a mental health diagnosis. They also found that self-directing participants in the study were at least as safe as those in agency-directed care.

Other Materials (Reports and Essays)

The Emergence of Mental Health Self-Direction: An International Learning Exchange

By Bevin Croft, HSRI, Kaipeng Wang, Benjamin Cichocki, HSRI, Anne Weaver, and Kevin Mahoney
Published in Psychiatric Services Open Forum, January 2017

This Open Forum essay describes an an international learning exchange meeting, held in September 2015, in which experts in self-direction and mental health from seven nations convened to share best practices, discuss challenges, and lay the groundwork for a learning community to support the continued development of self-direction. Meeting participants identified three themes that represent next steps toward ensuring that the promise of self-direction is realized. First, self-direction involves a culture shift toward value-based systems change. Second, people with lived experience must be involved and supported at every level, including direct support, leadership, and oversight. Third, stakeholder communication about self-direction’s impact is critical.

An Environmental Scan of Self-Direction in Behavioral Health: Summary of Major Findings

By Bevin Croft, HSRI, Lori Simon-Rusinowitz, Dawn Loughlin, and Kevin Mahoney

The authors conducted an environmental scan to understand the facilitators and barriers to self-direction in behavioral health (that is, mental health and substance use disorders) and to develop parameters for a large-scale demonstration and evaluation project. 

See also: "Environmental Scan of Self-Direction in Behavioral Health: A Review of the Literature" and "Looking at Self-Directed Services for People with Serious Mental Illness or Substance-Use Issues"

Feasibility of Expanding Self-Directed Services to People with Serious Mental Illness

By Eric Slade
Prepared Report for the Office of Disability, Aging and Long-Term Care Policy, Office of the Assistant Secretary for Planning and Evaluation at the U.S. Department of Health and Human Services

This report provides a review of available information on self-directed care (SDC) programs in mental health care settings (as of 2011, the year of publication) and discusses potential policy implications of large-scale implementation of SDC programs serving persons with serious mental illness.

Self-directed care for adults with serious mental illness: the barriers to progress

By Vidhya Alakeson
Published in Psychiatric Services Open Forum, July 2008

This Open Forum essay identifies three main barriers that explain the limited adoption of self-direction as of 2008: the absence of a strong evidence base to support the effectiveness of self-directed care for serious mental illness, uncertainty over the appropriate scope of self-directed care, and the absence of a sustainable source of funding. The author states that a large-scale evaluation could help to address the first two barriers, and that the introduction of the 1915(i) provision of the Social Security Act in 2007 could partly address the funding barrier.